A Childhood Cancer Survivor Blogging about the World of Childhood Cancer

Posts tagged ‘PAC2’

There Once Was a Blog About Childhood Cancer

Grace: A Child's Intimate Journey Through Cancer and Recovery

Once upon a time– long, long ago, and in this very land we live in– there was a girl who wrote a daily blog to help raise awareness about childhood cancer. With a deep care in her heart for all children who have faced the battle, she sought to make a difference in our world for them. Because childhood cancer is pitifully overlooked and underfunded, she knew she needed to join other childhood cancer awareness advocates in sharing and speaking the truth. She knew her role in this life as a survivor was not just to be grateful for her own life, but to work passionately to stop childhood cancer.

Alas, this young survivor entered her senior year of high school. Amid all of the studying for her challenging advanced placement courses, she began applying to colleges. With future options spread out before her, she knew, without a doubt, that she wanted to study to become a pediatric oncologist. And so, the college applications began, as the girl wrote essay after essay with the hope of being accepted to a great school. Double alas, the reality of paying for her college education sent her on a “Scavenger Hunt” for scholarships, and the essay-writing and packet-making reached a fever-pitch!

But something huge has been missing from her life. She needs to educate people about childhood cancer. She needs to share news; she needs to be aware so she can make others aware. Her passion and purpose have been buried under the weight of preparations for the future. She has had to keep reminding herself that there is purpose in the applications, that they are so much more than just “papers.” Her sincere hope is that all of the application work will translate one day into saving the lives of children.

So now, with a huge smile, and a breath of relief, this girl is about to re-enter the World of Blogging About Childhood Cancer.

It is SO good to be back!!!!!!!!!!!!

Please do all that you can to make our voices heard—thank you PAC2 for all of this information about the severe shortage of methotrexate.  It is true, “Our kids need ACTION NOW!

New York Times Article“Supply of a Cancer Drug May Run Out Within Weeks”

http://www.nytimes.com/2012/02/11/health/policy/supply-of-methotrexate-a-cancer-drug-may-run-out-soon.html?_r=2

Dr. John Maris testified before Congress about the shortage

http://curechildhoodcancer.ning.com/forum/topics/dr-john-maris-chop-testomony-to-congress-on-the-drug-shortage?xg_source=activity

Please take swift action—as if it were your child who needs this medicine to survive…

President Obama, The White House: 202-456-1111
FDA: 888-463-6332

Find and call your rep here.

Call the 5 companies who have stopped/slowed production. Press the option for “adverse effects” & tell them how you feel:

APP Customer Service
1-888-386-1300
Bedford Customer Service
1-800-562-4797
Hospira, Inc. Customer Service
1-877-946-7747
Mylan Institutional
1-888-258-4199
Sandoz Customer Service:
1-609-627-8500

Finally click here to contact your legislators now and urge them to cosponsor the Preserving Access to Life-Saving Medications Act now!

(Thank you PAC2!)

 We must act now!

Why???

Out of respect for this brave warrior’s family, the names in the following quote will remain anonymous. I know this is not what people want to see or hear… but it is truth. Today, this is what one incredible cancer child faced. This is what the family faced.

“It won’t be much longer. His breathing is rapid and shallow. His chest sounds crackly and he’s been coughing up foamy white stuff. (  ) suctioned some out and saw blood in the tube. This is horrendous. I don’t think he’ll make it through the day, but I don’t know. So sick to my stomach right now.”

Our choices are:

1)      Look away and do nothing

2)      Act boldly

I choose to act boldly. Please, allow your love for children to stir you to immediate action.

With my deep respect to all those who choose action, I give thanks for you!

I love Reef! He is calling all of us to action

 

Hold Them Close

Grace: A Child's Intimate Journey Through Cancer and Recovery

The incidence of invasive pediatric cancers is up to 29% in the past 20 years. Source: PAC2 & CureSearch

One week from tomorrow, I will have the honor and opportunity to sit in the Reading Chair to share excerpts from my book at the Central Coast Book and Author Festival. The event takes place from 10-4 at Mission Plaza in San Luis Obispo on Sunday, September 18th.  Will those of you who have read Grace please help me choose what you think would be the best passages, so that I can use my time best to raise awareness for childhood cancer? The people organizing this event had no idea that September, along with being Literacy Month, is Childhood Cancer Awareness Month as well. They do know now!

Maybe this for one… from Grace

“I heard myself groan and pried my eyes open to look at the clock. Believing it was morning, I was shocked to see it was only midnight. Ugh. I tried to adjust myself to get more comfortable, but I found my weakness overbearing. I didn’t want to move. Heck, I couldn’t move. I let out another moan. My stomach hurt so badly. The pain was nearly unbearable, like barbwire was trying to be churned up and digested in my belly. The cries and moans that escaped from my lips woke Mom, who slept on the fold-out bed nearby. As she turned to look at me, I blubbered and groaned in pain. I just couldn’t help myself—that was one of the worst moments of my life. Mom reached for my small hand that hung, motionless, over the side of the bed. The tears flowing down my cheeks settled on my pillow, making it wet and soggy. I didn’t believe where I was or how I felt. It was all too intense, too scary—too mind-blowing. Lying there, I wondered if other people besides Nurse Cyndi and Mom knew of my suffering. While I sobbed, groaned, and experienced total and complete helplessness, people were sitting on their couches watching Jay Leno with a tub of Häagen-Dazs. My mind tried to grasp this concept, but it became too exhausted and failed. Words only from hell will begin to suffice in describing how I felt that night. The only thing that gave me hope was the warm, soft touch of Mom’s hand.”              copyright Melinda Marchiano 

 As I was saying in my last post, it’s those mini-lights of love and hope that help get us through the most difficult times. If we are not careful—and grateful—we miss them all. No matter how bad things got, I had Mom’s warm hand. My message here to all of the families who feel they can do nothing to help the suffering of their beloved child who is fighting cancer is to let you know that the best thing in the world was to have someone just be with me, just love me, just hold me.

So hold them close. Know that your presence, warmth, and love are exactly what they need—even if they cannot express it.

Hold them very close.

Reefie Needs our Help

 An update for everyone who has fallen in love with Reefie:

Please continue your support for this amazingly strong and incredibly lovable boy!

http://www.gofundme.com/ReefieCarneson-Family

A MIRACLE IN THE MAKING
by Charmeon FortheCure Carneson on Friday, September 9, 2011 at 2:29am

“OMW Dont know where to start. Ryan and Lydia are blown away. Such positivity, such incredible hope. Thank you Lord and everyone for getting him to this incredible hospital. Dr. Shah wants Reef back as soon as Novemberr as an inpatient for a week and then for an outpatient for 1 year. God knows how we are going to raise that amount of money in so short a space of time. Dr. Craig is soooo positive, says they have had worse contractions of hands and those kids are now using their hands perfectly. OPERATING WOULD BE A HUGE MISTAKE. They will have him eating, drinking talking and using his hands in a year. Dr. Shah says Cyclosporin is known to affect the hearing adversely and Reef may need to be fitted with hearing aids. The have a new drug on the market which apparently after his ONE WEEK of inpatient treatment will clear up his GVHD. GVHD WILL NOT BURN ITSELF OUT as we have been told, the contractures would only get worse and Reef would land up in a wheelchair. They are sorry that he was not seen to earlier. They have not seen a child with such bad GVHD before because they NEVER let it get this bad before treating it. REEF WILL HAVE TO HAVE ANOTHER PORT INSERTED. They also recommend that he see a pulonologist (horrified at the piece of port that is still in his chest) an opthalmologist, an orthopaedic surgeon – oh so may specialists. THEY WERE AWESOME – everything Reef had done he got a little toy, at one stage he dropped his toy, a nurse swooped down grabbed it, sterilised it and gave it back to him. GET THIS HE WILL BE ENROLLED IN SCHOOL there in December as they encourage that he mix with other children.
HE MUST NOT HAVE HIS BABY INNOCULATIONS NOW as we have been advised,. OH Lord I could ramble on here for hours – So much positivity at 2.30 am had my head reeling. Ryan will need a work permit in order to stay in the country that long. I AM IN TEARS HERE AND JUST CANT STOP – THANK YOU TO EVERYONE FOR GIVING REEF THIS CHANCE TO BE A NORMAL HEALTHY LITTLE BOY.”

Go Ahead… Jump In!

Grace: A Child's Intimate Journey Through Cancer and Recovery

Today is a gratitude day… as grateful as every day has been since my outstanding medical team helped rid my body of cancer. My three-year scans just came back “All Clear.” For Dr. Dan, Nurse Pam, Nanci, Robyn, Zippy, Jaynie, and everyone else at Cottage Hospital, I give you my love and thanks! I apologize for not being a “normal” patient and thank you for dealing so “gracefully” with my Melinda-ness!

Rather than let “Survivor’s Guilt” overtake me to the point where I cannot function to help others, I have found it necessary to tweak that thought and those feelings into action that will help. The hardest part of all for me is knowing of children who die each day from childhood cancer– knowing the suffering they have faced and the suffering of their families. There is no “Half-Way” point of caring about childhood cancer patients… either you jump right in and become submersed, or you stand on the sidelines with little understanding of what is truly going on.

Fair warning: Jumping in will give your heart the ride of its life.

Truth: Jumping in will bless your life with truly remarkable heroes!

Children's Healthcare of Atlanta making Children Happy and Health

I just read this news from PAC2 about Andrew McDonough B+ Foundation ! Does it get any better than this? Dancing to raise money to fight childhood cancer??????????? Northwestern University– thank you for jumping in! Happy Dance Time!

I will rewind life a bit for my next posts so that I can begin sharing more about the Hope Tour after we left New Orleans. 

Children's Healthcare of Atlanta

Calling All Heroes

Grace: A Child's Intimate Journey Through Cancer and Recovery

As each week flies by faster than the last—especially this time of the year—I need to place many things at the top of my priority To-Do-List.  School is important, dance is extremely important, and one priority that constantly remains critically important to me is raising awareness for childhood cancer.

Keeping my room clean is not so important…

I say this not to ease my guilt as I type these words, but to let you know that rubble can wait… children fighting cancer cannot.  I would love for everyone to see that we don’t have time to mosey around. Please join me today in taking action; please join me in ignoring the messiness of life for a moment to choose to do any or all of the following:

Please click on the link below and vote for the Isaiah Alonso Foundation.  This is seriously easy, my friends!

http://bit.ly/iGuo4m

PAC2, always one of my favorite sources of information, is asking us to contact our elected representatives to help bring increased funding for pediatric cancer research.

http://acurechildhoodcancer.ning.com/forum/topics/pac2-initiative-support

Specific Instructions from PAC2—including contact help links:

“Senators Jack Reed (D-RI) and Johnny Isakson (R-GA) are spearheading a bi-partisan effort to get as many senators as possible to sign-onto a letter to the Senate Appropriations Committee requesting increased funding for pediatric cancer initiatives in Fiscal Year 2012.   

 Senator Reed’s office has asked that the community engage our grassroots in supporting this effort.   Specifically,getting advocates to ask their 2 senators to sign-onto the letter.

HOW YOU CAN HELP……..

  1. 1.     Please call your two senators in Washington and ask the receptionist for the email address for the senator’s health care legislative assistant.  Identify yourself as a constituent  when you call.
  2. 2.     If you do not know your senators phone numbers, they can be found here:http://www.senate.gov/general/contact_information/senators_cfm.cfm
  3. 3.     Once you have the legislative aides’ email addresses, please send separate emails to them that contain the attached correspondence (download here) from Senators Reed and Isakson.
  4. 4.     Include a brief note in the text of your emails, that;
  • makes clear you are constituent,
  • conveys why you are involved in the pediatric cancer community,
  • specifically asks the  senator to sign-onto the letter in support of funding for pediatric cancer programs.
  • you reference the attachment from Sen. Reed and Isakson which has all the details the aide will need
  • you close by asking to be kept apprised of the senator’s decision.   Include your home address in your message.
  1. 5.     Please note — This is a letter for senators to sign.  Please do not contact Senator Reed or Isakson’s office and ask that your signature be added to the letter. 
  2. 6.     The deadline for senators to contact Senators Reed and Isakson to sign-onto the letter is June 8th.  Offices will need some lead time to consider this request so please act today!

Thanks!”

Some very exciting news this week came from Alex’s Lemonade Stand with their announcement that Toys R Us has joined them in the fight against pediatric cancer.

http://www.toysrusinc.com/press-room/releases/general/2011/toysrus-inc.-joins-alexs-lemonade-stand-foundation-in-the-fight-against/

This gives me hope that more corporations will awaken to act in very large ways to help stop childhood cancer.  Congratulations to Alex’s Lemonade Stand for this major partnership that will without a doubt save children’s lives.

I think it’s a great thing that Toys R Us cares about children who may be too sick to even play with toys. I admit that I look at many corporations with skepticism about their motives and disgust for their greed. Show me wrong, corporate America, show me wrong! Would you like to line up behind Toys R Us and form a nice, long train that will chug up the childhood cancer hill to a cure?

Get your couplers ready for hook-up!

And what is the reason for all of this effort?

Because stories like the one below are common in the world of childhood cancer. It’s easy to get caught up in foundations and fundraisers, but all of this effort is about each individual child. It’s about the children who have suffered and died. It’s about the children in the midst of their battle. It’s about letting everyone know by our actions that their lives matter.

Let’s change that word “common” to “extinct.”

From a friend…

First and foremost…we have a friend who desperately needs our help.  Our buddy, Santos, is fighting a second relapse of his brain tumor.  They are wishing to do some experimental treatment, BUT insurance will not pay for this treatment.  Without $20,000 to begin, they cannot get him ANY treatment…we all know what that means.  He needs a hero, and my thinking it that all of combined can be heroes to this little boy–we can give him HOPE!  He is a sweetheart and he and Braden had a grand time one day when they came up to the hospital to visit.  Santos and his family are very faithful, softspoken, courageous, warm, loving, and wonderful people–I really can’t say enough good things.  I know there are many things that we all are asked to consider contributing to, but this one could give Santos more time on Earth with his family–I don’t think there’s a greater gift.  PLEASE consider helping and spreading the word to others so they can help–no donation is too small, every dollar counts and helps! Please help us find heroes for Santos—he is most certainly one of ours!  You can make financial donations to:

Industrial State Bank
Att: Santos Arreola Treatment Fund
Account # 130000794872
P.O Box 6007
Kansas City, KS 66106

Perhaps donating two bucks to Santos will be the greatest gift you ever gave yourself.

Calling all heroes…

LoveBug, Legislation and Beaver Dams

Grace: A Child's Intimate Journey Through Cancer and Recovery

I met one of my heroes. I will never, ever forget it.

I met Braden Hofen.

It was even more inspiring than my wildest dreams could have imagined.

Why?

Because he is Braden!

Are there ever times in your life where you really want to do something, but then those creepy doubts and negative thoughts take over, and you choose to accept them over what your heart is telling you to do? Well, this time, our hearts won. Mom and I cannot even describe what it means to us that we were able to travel to Kansas for Braden’s Run! There were so many highlights, I won’t name them all, but I will tell you that meeting others who are passionate about the fight against childhood cancer—while kicking cancer’s patootie—was awesome, awesome, awesome! I mean… what better inspiration and motivation to keep advocating for the children, than to look straight into the eyes of others who feel just like I do? Memories of spending time with Braden, his family, Christine (Hello–tremendous friend who was inspired by Braden and Deliece to start the Oprah, Please Do a Show on Childhood Cancer Facebook Page,) Lauren, Rachel, and Patrick will always be warm inside of me. I even got to meet two of the amazing 46 Mommas! Ms. Cheryl, I will never forget the surprise blessing of meeting you!

Back to six-year – old miracle boy Braden…

I am still filled to the tippity-top with the love and support that surrounds him. He brings out the very best in people by being the Lovebug he is. His family, his friends, and the people of his town and surrounding communities came to Braden’s Run to show their support in a great big way. The Kansas City media and the Kansas City Chiefs honored the event with their support as well. Braden’s Hope Foundation raised a lot of money for pediatric cancer research.

What if?

What if the money raised last weekend funds the exact research needed for a cure?

Seriously… what if?!

Doesn’t it make your mind spin… thinking of what you can do to multiply the odds of funding research for a cure??????????

Speaking of funding, thank you PAC2, for your update on the Caroline Pryce Walker Conquer Childhood Cancer Act:

From PAC2  4-22-11

We have all wondered why this Act, which had 100% bipartisan support, would NOT be fully funded.   Interestingly enough, so did the House of Representatives Appropriations Committee, who said this to National Cancer Institute (NCI) in the FY 2010 House of Representatives Report 111-220 (Page 109):

“Pediatric Cancer — The Committee urges NCI to intensify pediatric cancer research, including laboratory research, to identify and evaluate potential therapies, preclinical testing, and clinical trials through cooperative clinical trials groups. This research should include research on the causes, prevention, diagnosis, treatment, and late effects of pediatric cancer. The Committee also requests that NCI report to the Committees on Appropriations of the House of Representatives and the Senate by June 1, 2010 on the actions it has taken to implement the research-specific portions of the Caroline Pryce Walker Conquer Childhood Cancer Act.

Why is funding for research critical NOW?

Noah.

Another child lost to cancer. Another family with broken hearts. Another lost future.

One less beautiful soul in our world. We need beautiful souls.

We cannot wait—children are not like roads that can wait to be repaired. I see our tax dollars regularly appropriated for road repairs and expansions. I am not suggesting that roads are unnecessary, just wondering why this type of funding seems to flow like a river while there are endless “Beaver Dams” blockading the swift flow of funding for critical research that will save children’s lives. We need to prioritize right now because the number one killer of our children is cancer.

It won’t go away by itself. The facts are– it is becoming more prevalent. Most childhood cancers have no known cause. Let’s find a cure; let’s find the cause. Imagine not only a cure, but prevention—whoa!!!

This discovery will not come cheap. I wonder how many will give of their time, give from their hearts, their wallets and their guts to be able to one day be certain that not one more child will suffer as Noah has.

It’s time for all of us to put on the fighting gloves and fully fuel up. The Monster is getting bigger, meaner, and stronger– and it is making me really, really mad.

Anyone ticked off? Want to do something about it?

Please pray for Noah’s family.

Please remember there are 40,000 children fighting cancer in our country right now. Please know that they need us. Over 200 children were diagnosed with cancer in the United States this past week, and this statistic continues each week that comes and goes.

Every chance you get to give to pediatric cancer research is an opportunity to be a part of the end of the suffering. Every little bit matters… every single bit.

I want, with every speck of my soul, to be a part of ending the suffering.

As of yesterday, a new website launched…  www.melindamarchiano.com

Please direct people who want to buy my book to this site…

*** We (Happy Quail) chose a merchant processor with a Give Back program to benefit Children’s Miracle Network—Children’s Miracle Network Hospitals are where the vast majority of childhood cancer patients receive their care.

*** Each month, we will choose a different childhood cancer organization to donate proceeds to. The first foundation we have chosen is Braden’s Hope For Childhood Cancer.

*** If you would like your book signed, I would love to…

Now, I need to thank each of you that are doing your part. I realize that sometimes it seems like we are all trying to make it across a violent sea with a row-boat and only one oar… but please, please keep doing what you are doing.

46 Mommas & St. Baldricks—please keep shaving

Alex’s Lemonade—please keep selling that lemonade

CureSearch—please keep walking

Others… you know who you are… please keep on.

Let’s keep inspiring and motivating each other. It makes us stronger. The love we share among us is creating a cohesive bond of hope.

Where there is love, there is hope.

Hope… for each child… every single one is precious. Every one. Oh gosh… do we need hope!

People of Kansas and Missouri… I have been blessed to meet you!

Braden and HOPE!

Creating Hope

Grace: A Child's Intimate Journey Through Cancer and Recovery

There are times I wish I could transport my People Shell through time and space so that I would be able to attend an important event… or be able to wrap my arms around someone I love.

I really could have used a People Shell Transport to bring me to Washington D.C. to attend CureSearch’s Advocacy Days and to witness the introduction of Kids v Cancer’s Creating Hope Act in the Senate by Bob Casey. (D – PA) This legislation means HOPE for many who suffer from “rare” diseases. Childhood cancer is classified as a “rare” disease— although 46 children in the United States are diagnosed with cancer each school day and 7 children die from cancer each day. Childhood cancer does not fall under the “rare” category in my personal encyclopedia. I look forward to the formal report from PAC2; Bob Piniewski (PAC2, dad to AJ,) Joe McDonough (B+ foundation, dad to Andrew,) Andy Mikulak (Max’s Ring of Fire, dad to Max,) thank you for your tireless commitment to helping children with cancer. Thank you Senator Bob Casey for your compassionate work– and thank you to all of the childhood cancer advocates who participated. (I will begin searching now for a Transport for next year!)

“Of the nearly one in 10 Americans with rare diseases, approximately two-thirds are children,” said Peter L. Saltonstall, President and CEO of the National Organization for Rare Disorders (NORD).  “Many of these rare pediatric diseases are very serious and treatments are desperately needed.  By expanding priority review vouchers to include pediatric rare diseases, this legislation would encourage the development of treatments for children with serious rare diseases.”

Now, two reasons why we need to act—now.

(Do we really need “reasons”… these are our dearly loved children fighting for their lives against a horrible disease!)

One of my dear Frovies (Friends I Love, and the “ie” is a hug at the end) on Twitter, Hara, asked me if I would please pray for Nick, passing along his Caringbridge site.

http://www.caringbridge.org/visit/francafamily/journal

My FB buddy, Steve, passed on this:

http://abclocal.go.com/wpvi/story?section=news%2Flocal&id=8031009

Yes, we need HOPE for children. Thank you to everyone working toward this goal. With cooperation, commitment, dedication and hard work, we will collectively reach the goal of curing childhood cancer.

Hero Taylor

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Where oh Where is There Great Information?

Grace: A Child's Intimate Journey Through Cancer and Recovery

I have a question for you. Where do you go for up-to-date, accurate information about childhood cancer? Where can you look for important facts, pending legislation, a list of resources, a summary of what other childhood cancer foundations are doing, personal stories, and much more?

People Against Childhood Cancer, or PAC2.

This organization was started by someone I look up to. If I am looking for answers to important questions about childhood cancer, this is the man I ask. And you know what? He always, always, takes the time to answer my questions with sincere helpfulness. I appreciate the way he takes lots of information from many sources and synthesizes it into a meaningful package. I love how it is a place for many organizations to share their voice.

I love how this man has given his heart and soul to make the world a much better place for children fighting cancer. I love how this man is working his ever-loving you-know-what-off to do all of this and, at the same time, raising money in memory of his son to fund pediatric cancer research.

The man I am speaking of is Bob Piniewski.

Here is a great opportunity to help him in his current efforts to stop childhood cancer… Bob will be shaving his head to raise money for St. Baldrick’s.

http://www.stbaldricks.org/search/everythingresults/searchValue/bob+piniewski/submitEverything/Search/

Right now, before you move on with life, click that little linky-dinky above. Please consider what you might do without this week so that you can donate even $5. Think about the sacrifice that my friend, Bob, has made. Please think about the children who truly need our help. Please give what you can.

Thank you Bob, for everything…

Please help Bob raise money for St. Baldrick's in memory of AJ

Facebook/ Grace: A Child’s Intimate Journey Through Cancer and Recovery

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